January 2016
Newsletter

Dear Friends,

A new year is here. Pallium India has just celebrated its 12th birthday, and it is time for some introspection. Why, Pallium India is going to be a teenager this time next year!

We have had some good years and some not-so-good years; but overall we have had some significant successes. And the successes have been because of support from many of you. So, as we welcome the new year in, thank you, everyone who supported us and walked with us. And may your new year be the best ever!

“This is a humanitarian endeavour. I am glad you are taking the initiative,” said Mr Atul Tiwari IAS, Principal Secretary of Health, Government of Karnataka.

With the initiative of Dr Linge Gowda, palliative care physician and Director of the Regional Cancer Centre at Kidwai Memorial Institute of Oncology, Bengaluru, seniors officials from heath, National Health Mission (NHM) and Drug Controller sat together with palliative care experts to discuss the possible palliative care policy for Karnataka.

Perhaps it is indicative of the changing times that there was not one word of dissent; not one face showed lack of enthusiasm. The group sat together, discussed possible plans of action. A working committee is likely to meet soon to discuss the possible policy document. Pallium India hopes that the draft document submitted by it will ease the process.

“Millions of people around the world are forced into poverty while living with non-communicable diseases such as cancer, or other serious health conditions. Paying for costly treatment, loss of income, or travel for treatment and care, all contribute to this downward spiral.” In a report published in the Huffington Post titled “Palliative Care and Universal Health Coverage“, Pamela Glasner discusses the importance of palliative care and the need to prioritise it in discussions around Universal Health Coverage and the Global Goal for Health.

Universal Health Coverage (UHC) is a target of the Global Goal for Health. It means that all people should have access to good quality, comprehensive health services without being exposed to financial hardship. Hospice and palliative care services are an important part of UHC, aiming to relieve suffering and to improve quality of life for adults and children affected by life-threatening and life-limiting illness.

The article highlights the report Palliative Care and the Global Goal for Health, published recently by international palliative care organisations ahead of Universal Health Coverage Day on 12 December, that calls for greater action and progress on delivering UHC.

Wheelchair-bound people got together on 6th of December, 2015 at an exhibition and sale of art and craft created by them. Their message: Wheelchair-bound people have much to contribute to society. Don’t confine them to their homes. Make our cities wheelchair friendly.

The program was organized by Pallium India, in collaboration with Manaveeyam Theruvorakkoottam and Art Faktory.

Pallium India had the privilege of being part of two workshops organized jointly by Eastern India Palliative Care (EIPC) and American Society of Clinical Oncology (ASCO) at Thakurpukur, Kolkata – a workshop for beginners on the 7th and 8th of December 2015, and a refresher course for palliative care professionals and volunteers on the 9th and 11th of December. Dr Frank Ferris and Dr Vivek Khemka from USA joined Dr Sankha Mitra from EIPC, and Dr Arnab Gupta, Mr Ranjan Gupta, Dr Rakesh Roy and others from SGCCRI to conduct the workshop, ably supported by the ASCO representatives, Vanessa Eaton and Ms Sarah Bachman.

Important strides! There was palpable improvement in the number and interest of participants compared to previous years. West Bengal, with so little palliative care at the moment, needs this badly.

Better days are coming!

Poonam Bagai, the Vice Chairman of Pallium India and Founder-Chairman of CanKids, was awarded the Nargis Dutt Cancer Conqueror Award by the Nargis Dutt Cancer Foundation. The award was presented by Priya Dutt.

CanKids…KidsCan is a registered charitable National Society working to make a Change for Childhood Cancer in India. It aims to identify and bridge the gaps to ensure best treatment, care and support to children with cancer. Pallium India and CanKids work together for the integration of palliative care into cancer care for children.

The Nargis Dutt Cancer Foundation is a non-profit and charitable organization committed to improving medical care in the Indian subcontinent.

Like previous years, 15 undergraduate students accompanied by Prof Jo Eland and Dr Ann Broderick of Iowa University have come to help us welcome the new year. In this cultural immersion course spanning three weeks, the students will learn palliative care in relation to health care in the country, and contribute what they can.

Welcome to our team, dear friends.

One of Pallium India’s collaborators is indeed a gem from the Arabian sea – from Lakshadweep islands. Maulana, the founder of the palliative care program, and his team including Dr Ali and nurse Mr Kafi with many volunteers perform wonders there. Our friends and well-wishers Professor Dr R.Krishnan and Professor Dr Padmaja Krishnan visited the islands recently. Here is what they report.

“What impressed us most was the tremendous efforts taken by Moulana to organize domiciliary care to the old, disabled and destitute, many of whom were below the poverty line, providing them air/water-beds, dressing their bed sores, giving them enemata or manually disimpacting faeces, changing their catheters/ nasogastric tubes when needed.

These were all volunteers, who were happily performing these tasks. Moulana himself taught dance in his school. The team was up at 4 every morning, for Palliative Care, then would do their regular jobs from 10-4, then return to caring the sick till nearly midnight, 7 days a week, 52 weeks in a year!

Most of all, the cheer the team spread to each house-hold was amazing- we were welcomed with open arms wherever we went. This spoke volumes for the rapport Moulana’s dedicated team (which includes local doctors, nurses and VIPs) has established.

We were also very impressed by the meticulous detail they maintained records – all clinical details were mentioned, results of Scans and the latest Biochemical results entered. These notes made it easy for us to take in at a glance what was happening to the patients. Also, the Palliative team knew everything about each patient”.

Congratulations, Maulana and team. What a privilege for Pallium India to be your fellow-travelers!

[Photo: Nurse Kafi and pillion rider Dr Ali on their home visit vehicle.]

Some things catch public attention easily. Many important things do not – because their impact would be rather subtle though serious and far-reaching. For example, the recent changes in the Indo-US understanding about patent laws have steeply increased costs of medicines in India and they threaten to become costlier yet. Similarly, the reduction in health budget (already one of the lowest in the world, in terms of percentage of GDP – at about 1.12%) by 15% in 2015 threatens to have a long lasting adverse effect on public health in India.

Here is another subtle one. The Medical Council of India (MCI), the apex regulatory body of the medical profession with statutory powers, has decided not to make public any of its Ethics Committee decisions. The Ethics Committee minutes used to be uploaded on the Council’s website, but that practice has ceased since October 2013, when the current MCI administration took charge. The Council, in a reply to “People for Better Treatment” application under the Right to Information Act, said that it “no longer maintains consolidated minutes of Ethics Committee”.

Even in our courts, all proceedings are available to the public!

Read the moving stories illustrating the need for pain relief and palliative care by Dr Hannah Fox and Ms Kate Jackson, based on Hannah’s experience in India over a year.

In the journal article, Pain, Palliative Care and Compassion in India, Hannah Fox and Kate Jackson skillfully narrate true stories of patients to bring home to us the lack of palliative care and the resultant suffering in India, and also the islands of compassion that exist in the limited number of palliative care units showing us what could be done.Baby Safiya, just 12 months old, had hydrocephalus which was operated on several times. Unable to cope with the stress, her father committed suicide, leaving her mother alone to care for Safiya.A similar fate awaited Somnath’s mother. Somnath is a paraplegic person living in Kerala, India. As no other service exists to care for paraplegic people, Pallium India takes care of them.The complicated dynamics of a joint family and the strain all become too much for Somnath’s wife and she too takes her own life, leaving his mother to care for him.These are not rare cases. During the calendar year 2013 alone, 26,426 people committed suicide in India due to disease. Safiya and Somnath are among the tiny minority in India who get some access to palliative care, even if this comes late.If you think the narrative gives only the dismal state of palliative care – and healthcare as a whole – in India, you are mistaken. The article also paints the beautiful picture of Rekha-di, the psychologist patient coordinator with the palliative care team at Saraj Gupta Cancer Centre and Research Institute (SGCC&RI), Kolkata.Their patient, a delirious young man, looks agitated but it soon becomes apparent that this was not due to confusion or delirium, the man is simply frightened. As Dr Fox searches through the list of possible medications in her head, Rekha-di just goes to him, puts her arms around him, holds his head on her shoulder and strokes his back, speaking softly to him. The tension dissolves. The man is comforted.The article also describes the unrelieved pain that a 30 year old lady with advanced breast cancer goes through due to a lack of access to morphine, and the intense relief of the carers when Ms Dutta gets morphine that relieves her pain and breathlessness.Congratulations to Dr Hannah Fox and Ms Kate Jackson for these stories which could be powerful tools for advocacy.Congratulations also to the Journal of Pain and Palliative Care Pharmacotherapy and to Taylor & Francis, the publisher of the journal, who have made its narratives feature open access and to Mr Art Lipman, the editor of the journal.

It is not easy to understand how spiritual support works in a multi-religious environment unless one has lived in such a society.

In a culture where diversity of faiths and spiritual practices exist, there is potential for a complicated situation if a religious leader of one faith provides care to a person who follows another faith. Sometimes, though, the spiritual needs at the end of life can be surprising.

In the narrative entitled: ‘A Lesson in Spirituality’, published in the Journal of Pain and Palliative Care Pharmacotherapy, Dr Vidya Viswanath describes the story of a Hindu man with advanced cancer, battling a fecal fistula. His illiterate wife, in the author’s words, turns out to be a “perfect” spiritual caregiver.

The woman asked the husband: “If something happened to you suddenly, what would you want me to do?” The man replied that since childhood he has liked the rituals of church, and so would like a Christian funeral and burial. When he died, he was buried the way he wanted. The extended family then performed Hindu rituals.

I find the story so very uplifting – the merging of religious beliefs, all tending to connect the dying person and the family “to nature and the significant or sacred.” This story reaffirms that the essence of spirituality is the coexistence of harmony and humanity, transcendent of religion.

What do you do when you are all set to celebrate Onam (the annual harvest festival of Kerala) and discover that your 83-year-old dear Daddy has a medical problem? The festival turns to a nightmare – a trip from doctor to doctor and from hospital to hospital. Then the verdict – brain tumour. And the solution – surgery.

Bindu Nair, a volunteer for Pallium India, and her family had to go through with the process of an agonizing decision – what would be the best for her Daddy. The surgery would take care of his tumour but what would it do to the person in the meantime? She needed answers. Finally, she found a doctor who would talk, not only about the tumour but also about her father. That doctor agreed with her that rather than the surgery, what may be best for the quality of his life for the remainder of the time may be the alternative, palliative care.

Bindu says that if she had not been exposed to palliative care she wouldn’t have known how to approach the issue, and how to get the medical system to help her father and not just the tumour. Read the article “How Palliative Care helped me make an important decision in life” published in the Journal of Pain and Palliative Care Pharmacotherapy.

This one-day event, divided into two sessions, will cover a comprehensive range of topics related to Palliative Care. The speakers include many global palliative care experts, Medical and Surgical Oncologists, Anesthesiologists, Pain Specialists, Nephrologist, a Nurse, Nutritionist, and a Psychologist.

IASP invites eligible members to apply online for an IASP Early Career Research Grant. IASP will award multiple grants of up to US$20,000 each to support independent researchers in the early career stages of their careers.

To be eligible to apply, you must:

Be a member of IASP

Have received your final degree or completed your professional or specialty training no more than six years ago

Never have received a grant that provides support equal to or greater than the IASP Early Career Research Grant.

Pallium India seeks clinically experienced international physicians who are able to practice and teach in a variety of settings, include home visits, outpatient visits, and the inpatient unit. They must be adaptable to new environments and be able to commit to over 3 months. Pallium India will provide translators as most patients will prefer to speak Malayalam. Teaching will be done in English.
If you are interested, please write to us: info@palliumindia.org

We are happily accepting toy donations for our weekly children’s palliative care clinic. Certain specifications need to be considered before sending the toys across, due to the nature of the children’s illnesses.

Kindly avoid toys with small breakable parts, anything with batteries, toys with sharp edges, regular sized Lego pieces, jigsaw puzzles with small pieces, games involving liquids (like the ones that shoot rings onto sticks at the press of a button), stuffed toys that have fine hair and fluff, etc.

If you are interested in sending something across, do call us (+91-9746745497) or write to us:info@palliumindia.org. Thank you very much!

PARTING SHOT

Zarina’s (not her real name) body lay limp as her uncle physically carried her up several steps on to the classroom and lay her on a couch.

This was at a workshop conducted by the palliative care unit at Chittaranjan National Cancer Institute (CNCI) in Kolkata in collaboration with Pallium India, on the 7th and 8th of December, 2015. The group of volunteers, social workers, nurses and doctors sat and worked together not only on the theory and on hypothetical case studies – but also on real patients. If any of you are asking yourself, “Is that ethically right? Does it violate confidentiality?” and so on, well, we did give deep thought to it. We had full permission from the families and patients, and we decided that it was ethically unjustifiable not to bring them in. This was the only way in which these patients could benefit from the consultation with expert faculty.

Zarina’s family thought she was in depression and that she had given up. She was just twenty-six, now battling advanced cancer. She wouldn’t eat or drink, and would refuse to swallow even the medication.

Here was a simple formula that the group learned together: When in doubt, ask the person. With a hand on her hand, a member of the team asked her, “What is your biggest problem, Zarina?” With a supreme effort, Zarina brought out one word: “Tired.”
“What else?”Zarina touched her tummy first, and then painfully raised her hand and held it to her throat. “Is it pain?” we asked.
She nodded ever so gently, as if a nod itself hurt so much.

The girl had unbelievably excruciating pain, which could easily be controlled on morphine, and also severe thrush which responded to Fluconazole. She did not live for long, but during those few days she could live and eventually die, with reasonable comfort.

And what is more, she became a lesson in herself, teaching about forty professionals and volunteers what palliative care was all about.

We congratulate Dr Jaydip Biswas, the director, Dr Debasish Jatua, the palliative care physician and team on developing this unit and making it work!

[Photo: Ms Rakhi Santhosh, Head of Nursing at Pallium India, at the workshop]

Disclaimer: Information provided by Pallium India has been collected from different sources and though every effort has been made to ensure that it is up-to-date, its accuracy cannot be assured. Pallium India shall have no liability for any damages, loss, injury, or liability whatsoever suffered as a result of reliance on the information provided.